Not too long ago I mentioned that I was entertaining the idea of a MS medication change. Well, we’ve weighed the risks and finally pin-pointed the direction we are moving in. One of the latest things out there: the pill for MS. Since it is so new I will chart my journey with you and let you know how I’m doing. Per chance I may even dare to walk again!

At this point my husband would usually tell me to calm down. In this particular case it just so happens that may be easier than normal because, although I’ve done all I need to do on my end, the medication still hasn’t come in yet. If you know how anal I am, you probably would feel sorry for my neurologist’s nurse. I now think she has caller ID because they don’t seem to be returning my phone calls anymore! Well, at least not as promptly as I deem appropriate. I hope she isn’t reading this! By the way she is very nice. I just found a way around this. I can email my doctor!

WHAT?!

I call the nurse. No answer. I email the doctor. Problem solved.

Well not really… after all I still don’t have the medication! So I’m in between medicines. I have more fatigue and weakness than usual. Inevitably with my fatigue there are irritability, depression and esteem issues tagging along. My brain is foggy and to top it off and I think I’m gaining weight!

But low and behold today I’m feeling pretty good. That’s the thing with this bloody disease. Today could be an entirely different picture than yesterday. It can be a picture worth sharing.

I came across an excellent comment from David “ Sometimes we can be very hard on ourselves, but with MS I have to remember that the new me is just different and damaged. But, certainly not broken and worthless.”

Those are great words to live by. I try to remember them but lately I’ve been hanging on by a string and I feel I’m just damaged…that’s all.

Nicole, Hello, I read your Post and I think you are One of the bravest young Lady’s I have ever met, don’t you ever give up, keep sharing that beautiful smile of your and my dear new friend never stop asking the Lord God, to protect you, Nicole, live every day don”t look back keep going forward you will be fine. Take care and may God bless you. Drakicus.

Dear beautiful friend…..you broken? Not a chance. Temporarily down for repair….no, no, no, no, NO. Damaged…no way. Ahh…forced into circumstances beyond your control which mandate periods of intense self reflection. During these reflective times, choices other people who do not share our disease have readily available in their “coping skills files” such as but not limited to: getting in your car and going ____, running, going shopping, spending the day at a bookstore talking to random interesting people, planting flowers…..you get the point….MS steals independence and being random. Depending upon our own unique MS….we have all had to partially to totally renovate our coping skills. MS has mostly stolen my energy reserves and shown me the acute difference between being “overtired” and fatigue. As not all of us sleep 24/7 though sometimes I would rather just sleep than face “brain fog”…uncertainty…waiting…depression….always relying on someone else’s energy to do simple things….our disease provides us a great deal of down time in which to focus on what was…what used to be…what might be again and What IS. What IS can be very tough to manage let alone accept. As you so eloquently pointed out dear friend…..with MS what IS today may not BE tomorrow or may BE for always. How hard to accept and adjust when what we know about MS is that
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Do you have a wash out period before you can try it? I remember having a wash out period before Tysabri. I know some have steroids while they wait…and I’m sure they will help with the iritability (checking your sarcasm system).

There are many times where I think the single most important thing for anyone suffering from a chronic disease is hope for a better tomorrow. MS for all its unpredictability gives us this. In this season, I will add to my list to be thankful for your incoming new drug and the possibly more important lift to your spirits. Have a wonderful Thanksgiving.

I am thinking about Gilenya too I took a needle ( Rebif) last night and told my husband one more needle and I think I will kill somebody – it never stops hurting – ice and warm compress my eye! 🙂 Good Luck with the new me I will be reading to see how it works for you – We are not broken just slightly dented but still good enough for sale ( althought they do mark down the dented cans- they sell them none the less LOL )
Have a HAPPY Thanksgiving –

Hi Nicole-enjoyed this article-and I sure hope your new med. arrives soon…I enjoyed the way you covered yourself after the remark about your nurse!! Good Job!!! Want to wish you and your family a beautiful Thanksgiving my friend. Sandra